shell shocked

It just keeps getting better and better. I called the neurosurgeons office Monday to set up an appointment but I can’t get in until June 17th because he is going to be out of the country doing ‘mission’ work. Fine. In the meantime I talked to my retired neurosurgeon glass blowing friend Dick and while he has been retired for 25 years and isn't up on all the newest treatments and approaches he did tell me a thing or two. first that the neurosurgeon won't do the angiogram, radiologist will and also if there is a repair the radiologist will do it. Then I asked which kind of aneurysm is worse, fusiform which has a bulge in the artery or the kind with a bubble on the side. Of course fusiform, which is what I have, is worse. With the bubble they can just seal it off. He doesn't know if they can put a stent in mine to fix it. Anyway a neurosurgeon friend of his just retired so Dick is going to call him and see what he thinks of the doctor I've been referred to and Dick will either have him call me or have me call his friend. So that's where I am on that.

But...went to the electrophysiologist yesterday about the continuous afib and the aneurysm. Doctor wants to take me off the blood thinner that prevents me from developing a blood clot in my heart from the irregular and/or rapid heartbeat that is afib because...aneurysm. We want the to blood to clot if it leaks in my brain. To do that he needs to perform a procedure that closes off the little bulge in the heart where the blood pools and forms clots. Don't like it but OK. And, because the medication is no longer controlling the afib and I'm in afib more often than not lately he says afib is progressive and if the med isn't working, it won't start working again so the fix is the ablation of the left atria for the afib. This means putting me under completely instead of the twilight sleep of the other procedure and the flutter ablation I already had. It's about a two hour procedure where he zaps the heart tissue all the way around both pulmonary arteries where they enter the heart and because this procedure is not completely 100% effective he will still close off the bulge and I will still be on afib med but it should control what's left of the afib but off the blood thinner. Whew! Following all that? There is one thing that could happen and that's if a thin wall from the heart to ? (don't remember what) gets perforated, it is very hard to stop the bleeding and could be fatal. Yay! But they know about that and are very careful and it only happens in 1 in about every 2,000 - 3,000 people. Odds don't sound that great to me but what else am I gonna do? Anyway electrophysiologist's office is arranging with the insurance and scheduling the procedure soon. Maybe in the next 10 days and then he will do the other procedure on a different day but soon.

Just got a call from the electrophysiologist’s office. I have a date for the ablation…June 3rd. A week from next Monday.

Forgive me for not coming around or answering comments as I intended to do. I’m just a little overwhelmed but know this, your comments and love and caring fill my heart. Thank you.   

 

a pain woke me up

Tuesday night about 1:30, I was asleep, dreaming I had a pain and as it moved up to my back in my dream, the pain woke me up. It was fairly high up between my shoulder blades right about where my heart is. My afib was going nuts, heartbeat really fast and irregular. The pain wasn’t terrible, I’ve had back spasms worse than this was, but it was enough to wake me up. Whoa, what the fuck is this. Am I having a heart attack? I sat up on the edge of the bed wondering if I should put some clothes on (I sleep naked) in case I had to call the EMTs. I got up and went to the bathroom, went back to bed and propped myself up a little, googled heart attack in women on my phone and of all the symptoms the pain in my back was the only one. I could feel the afib in my chest but it didn’t feel like it was being squeezed, wasn’t hard to breathe, no pain in my jaw or in my arm, not nauseous. It subsided a little while I played solitaire trying to calm the afib down some. Pain flared back up so I sat on the edge of the bed again trying to decided what, if anything, to do, and this time sat up completely in bed against the wall trying to distract myself with other games until the pain subsided and I laid down and went back to sleep. If you’re wondering where Marc was during this, we sleep in separate bedrooms because his snoring keeps me awake and with the dog and sometimes the cat, that double bed is just too small.

Miraculously, I woke up Wednesday morning, afib still active. After breakfast I worked outside for two hours digging up newly sprouted pecan and oak trees or cutting them at ground level and spraying a little poison on the exposed cut so they wouldn’t come back which they will do it you just cut them down. Came in about 1 PM hot, soaked, and sweaty and the afib was still a little active. Usually some physical activity will calm it down. It finally settled down into a nice sinus rhythm about 5:30. And then sometime during the night Wednesday night it started back up and I’ve been in afib since though not as intense as Tuesday night.

I did go ahead and go to SHARE Thursday morning and talked to one of the volunteers who had had a heart attack last year, asking about her experience. I told her what I had experienced and she encouraged me to call my doctor and if it happened again and didn’t stop after a few minutes to go to the ER. So when I got home I timed my pulse, at least 100 bpm, a little faster I think with skips or extra beats. I called my doctor’s office and talked to the nurse, ran it all by her. I had my regular biannual appointment scheduled for the 29th but she rescheduled me for next Wednesday the 22nd and told me that if it happens again or I get lightheaded and feel like I’m going to pass out before Wednesday and doesn’t stop after a few minutes to go to the ER and have them contact the office and to just take it easy until my appointment. By Thursday evening I didn’t feel very well, breaking out in sweats which are also a symptom of heart attack but also of afib and I do that a lot even sitting in the air conditioned house. I’d been in afib since Tuesday night with one short break and was starting to stress out, pretty freaked out about the whole thing. I went to bed and propped myself up playing games on my phone, really kind of afraid to go to sleep, until my heart settled down some, still a little fast but not too irregular

Friday morning…still alive! And feeling better, heart rate down to 86 bpm. If I make it through til next Wednesday without going to the ER I imagine the doctor is going to want to do a complete cardiac workup. I’ve only had that done once and that was 7 years ago right after I first started having episodes of afib during our trip to Hawaii but got a clean bill of health then.

So that’s what’s happening with me and now I need to take my mind off it because I’m starting to feel a little stressed out about it. A heart attack is not on my to do list.

thursday

the 15 packets of sugar they delivered with my oatmeal and two cups of coffee for breakfast Thursday morning

The afib stopped about 9 Wednesday night, they came in twice during the night to take my vitals and I was glad to see my blood pressure and pulse with good numbers but when I woke at 6 Thursday morning almost immediately an afib episode started so since I had been admonished by the day nurse to buzz them when I feel it happening, I buzzed the night nurse. Because my vitals had been good during the night I was surprised when she said I'd been in and out of afib all night. And flutter I asked. Yes flutter too she said. So it didn't work? I'm not a doctor she says.

After she went out I cried a little but I thought what good would that do me besides make the afib episode worse and raise my blood pressure and stuff up my nose and make my eyes red. It certainly wasn't going to improve the situation so I stifled it as best I could and blew my nose and wiped my eyes and tried to pull up my big girl panties but my mood had darkened, was in no mood for visitors. The episode didn't quit after the normal length of time and even got worse. I hadn't had one this bad since before I had started on the metoprolol. Well, I guess I'm not going home today after all I thought, so WTF, I'm worse off than I was before I submitted to this whole process...flutter not gone, afib worse, a bruised throat, and a hole in my groin. Yay! So I started a list of questions for when the doctor showed up and reminded myself that even so I was in much better shape than all the other patients on the floor. Decided FB and Twitter weren't doing me any good so no more of that and then I tried meditating to get it down which did help but didn't bring it under 100 and later even jumped to over 140 but went down again. This one didn't stop til right before 2 PM. At 4 the doctor was still a no show so the nurse went to give him a call. About 5 his physician assistant showed up and they came in to do another EKG. You've been in afib the PA says. Yes, it started just after 6 this morning and stopped a few minutes before 2. That's right, she said, you can tell, she asked? Yes, I can always tell.

Anyway, the EKG showed a perfect sinus rhythm but I wouldn't let her leave until I had asked all my questions which I won't go into detail here but, yes, the ablation worked. The flutter on the previous EKG was not generated in the right atria but is a different flutter associated with the afib in the left atria (remember, I had two different conditions) so the ablation in the right atria was a success. If it's going to revert, she said, it does so immediately and after the doctor zapped the spot he tried to induce the flutter again and nothing happened. So. It is possible that in a year or two the spot might heal or find a way around and it could revert and another ablation would be necessary but that only happens in about 5% of cases she said. The doctor wanted to observe me for another few doses, if nothing else happens he will release me. If I continue to have afib episodes he will try a different medication. If none of the meds stop it but only partially control it ie keep my pulse rate below 100, is that life threatening, I asked. No, she said. So ablation of the left atria is a quality of life choice. Apparently they are more concerned with keeping the heart rate below 100 than with completely stopping the irregular rhythm.

All stayed well and when the night nurse came around at 9 PM to give me the eliquis she told me she couldn't give me my next dose of the sotalol because my heart rate was in the high 50s and they had instructions not to give it to me if it dropped below 60. So how is the doctor supposed to observe me on this medication if he won't allow it to given to me?

Friday morning my pulse was still under 60 so I probably wasn't getting my morning dose either though I'm pretty sure under 60 is my normal resting heart rate and all I had been doing for three days was resting. Well, I had had enough of that and so I ordered my breakfast, put on my housecoat and slides and started walking the floor while I waited for it to arrive which caused a bit of a stir. The nurse hurried over making sure I wasn't woozy (every patient on the floor is considered a fall risk regardless and in fact the aide had told me earlier I was the only one on the floor that could walk, every one else being too sick I guess). After awhile she came in with my morning dose, it worked, she said, your pulse is up.

About noon the doctor came in. Ready to go home, he asked. Yes! Marc arrived promptly to come get me but it took until 3 PM to get all the necessary paperwork in order so it was nearly 5 before we got home.

I went ahead and went to the pharmacy before I settled in at home. Oh, the pharmacist says, we have to order the sotalol, we don't have any but they checked the sister pharmacy in El Campo about 12 miles down the road and they did have it so they transferred the prescription to them and I went to pick it up. Life in a small town.

So far so good. I haven't had a major afib episode since the one ended 2 PM on Thursday but since Saturday night every 3 to a dozen beats or so it will skip a beat or add one off and on, as if the afib is trying to manifest itself, and my pulse has remained consistently low from about 48 – 64 bpm. I imagine it will take some time to adjust to the medication now that I'm taking it twice a day and perhaps it will need to be adjusted. Right now I'm just taking it one day at a time. Haven't felt like getting out and doing any sustained yard work but I'm still supposed to be taking it easy for a few more days and it's too damn hot out there anyway.

previous:

the test and the procedure

recovery and observation

recovery and observation

I vaguely remember them removing those big patches they put on me but I don't remember if it was in the ablation lab or the recovery room but I woke up uncomfortable with headache, nausea, and sore throat intact with orders to stay flat on my back and not bend the leg whose vein they had gone through. They had given me meds for the nausea and I asked for something for the headache both of which stubbornly refused to go away. Marc and my sister Pam came back after I woke, Pam had to leave because she had out of town guests but daughter Sarah arrived and she and Marc stayed with me in the recovery/prep cubical til they were ready to move me to my room. At one point I had to pee so Sarah went and got the nurse assigned to me, would I prefer a female nurse he asked? No, not necessary, so he got the small shallow plastic bedpan and slipped it under my butt and exited the room. Have you ever tried to pee in a bedpan laying flat on your back? I finally coaxed my body to release and by the time I was done my entire butt was wet. Another nurse, a woman came in when I was done because my guy wasn't in sight and got me on my side, took away the bedpan and dried me off. I'm just glad I didn't have to poop.

Marc had gone to get me a banana during the bedpan incident because I thought maybe I could get that down but the first little bite convinced me otherwise. Once in the room the nurse brought me some saltines which I thought I could possibly nibble on and get down but gave up after half a cracker and not because of the nausea but because it was terrible, tasted like cardboard. I remember when saltines were good. I remember when store bought cookies were good, so many things our food industry and greed have ruined.

I had a very nice private room, all the rooms in the Heart and Vascular Institute at Memorial Hermann Southwest are private rooms, but I had to laugh at the bed which had a large heavy duty puppy pad on top of the bottom sheet that covered the bed by about 3/4ths and a smaller puppy pad on top of that one under my butt (which by end of day Wednesday I had pushed to the foot of the bed because, for one I wasn't going to wet the bed and for two every time I got up I had to smooth it out before I got back in because I've got the whole princess and the pea thing going and even the smallest wrinkle feels like a stone and for three one thing to smooth out was enough).

Anyway, shortly after I was in my room Marc left. He had been up since 4 AM and had to go retrieve the dog from my sister's house and let the cat out that had been housebound all day but Sarah stayed and when the nausea and headache finally went away I was feeling pretty good, in a good mood, yukking it up with my daughter. I wasn't supposed to sit up til 5:30 according to the instructions from the recovery nurse. I waited til 5:45 to sit up. At 6 my day nurse came in to help with the sitting up, saw me sitting up...aaand she's sitting up, she said in an admonishing tone. Yep, I'm still me.

Apparently I was feeling entirely too cocky and about 6:30 PM I started having an afib episode during my dinner and I guess the heart monitor went nuts because the day nurse came in and fussed at me and told me to finish my dinner and lay back and relax. When it was still going on at 8 the night nurse started me on the new drug an hour early and it stopped about an hour later.

Wednesday all was well, I'd sort of figured out the menu and tried to order things I thought they couldn't ruin and the doctor came by noonish, the ablation was successful and I could probably go home the next day. And then at 3:30 I had another afib episode. The nurse came in with the EKG machine at 4, you're in afib she says so we're going to do another EKG. Yes, I said, it started at 3:30. You could tell, she asked? Yes, I can always tell, I know when they start and when they stop the medical professionals always seem surprised about that. Any chest pain, she asked, no, never have pain but I can feel it happening. So they did the test and called the doctor and he increased my dose of the sotalol but the EKG showed flutter as well, the thing the supposed successful ablation was supposed to stop.

previous: the test and the procedure

next: Thursday

the test and the procedure

Wednesday night and I'm still in the hospital as I write, post test, post procedure. (that's when I wrote this, I'm home now, got home about 5 PM Friday afternoon)

I was told to be at the hospital at 7:30 AM for the TEE, transesophageal echocardiogram, no food or water past midnight, where they were going to have me swallow a thin tube with an ultrasound camera on the end to look at my heart from the inside, looking for blood clots before they did the ablation. My throat is still sore.

So we headed out at 6:30 and ran into blinding rain almost immediately all the way through the gauntlet of the Fort Bend County road work, narrow lanes through canyons with no shoulders that changes configuration often and when we finally got out of the blinding rain we hit all the slow traffic heading into the city. But we did get there mostly on time and they checked me in and sent me upstairs to wait my turn, about half an hour or so before they called me back to prep me which involved stripping from the waist up and putting on a hospital gown, an IV, taking blood for tests, an automatic blood pressure cuff, oxygen in my nose, and about a dozen leads all over my body for an ongoing EKG. The anesthesiologist, the doctor performing the test, and the tech, all good looking younger men, all came in at various times to introduce themselves, explained what they were going to do, and ask if I had any questions. The anesthesiologist sprayed a numbing agent into mouth and told me to swallow oh nasty stuff that made my mouth water like a fiend and a really weird sensation and handed me the dental spit sucking tube til it calmed down and when they were ready to start they had a red mouthpiece for me to bite on and strap around my head which would keep my mouth open during the test.

I started laughing.

I already felt like Frankenstein's monster all wired up but when the tech pulled out the mouthpiece that scene from Pulp Fiction flashed in my head of Bruce Willis and Ving Rhames all trussed up for rape which is of course not very funny at all but there ya go. The anesthesiologist wanted to know what was so funny. I couldn't see telling him why I was really laughing so I told him I just imagined what I must look like. Anyway they got started, the anesthesiologist started the drug saying breathe through your nose, breathe through your nose, breathe through your nose...and that's the last thing I remember til I woke up. I wasn't awake two minutes before a nurse came in. The whole thing had taken about 7 minutes. No blood clots, I was good to go. Oh and no food or drink for another two hours and nothing hot. Which wasn't really a problem because my throat really hurt. I managed to get down a peanut butter and jelly sandwich, a scrambled egg, and oatmeal, not all at the same time, and went to bed early because I was to be back the next day at 6 AM for the ablation.

We planned to leave at 5 AM so I got up at 4:30 thinking that was plenty of time to do my yoga routine, take a shower and scrub with antibacterial soap as instructed, and get dressed. It actually took me 40 minutes so we got off 10 minutes late in the dark through more rain but not blinding. After about 10 minutes I asked Marc if he wanted me to drive. No, I'm fine he says. About 5 minutes later I asked him again. Why, he says, am I driving erratically. No, sez me, but you're going 60 in a 75. Relax he tells me, they can't start till you get there. So I meditated the rest of the way and we did get there mostly on time. The same lady checked me in, how are you today she asked? I had been deprived of coffee for two days, I had a small headache and my throat hurt. Not as chipper as yesterday, I told her.

Once again I was sent upstairs to be prepped for the ablation where they were going to send a zapper through a vein in my groin into the right atrial chamber of my heart, induce the atrial flutter, and then zap the spot/s dead that were sending out the rogue signal which would put an end to the flutter. In theory and practice. Usually.

Whereas before I just had to get naked from the waist up and a hospital gown on, this time I had to get naked under the hospital gown but they did give me some socks. So new IV, this time in my wrist instead of higher up and the minute she stuck me blood just gushed out all over my hand and the towel underneath but she got me cleaned up and the rig all taped down, more EKG tabs, an automatic blood pressure cuff, shaved my pube halfway and then washed. Once I was prepped they let Marc and my sister Pam back to sit with me while we waited for the doctor to arrive and when he did I was trundled into the room where the procedure would take place by Terry, the male nurse who would help with the rest of the prep and whose job it would be to stay by my head and respond to anything I needed or felt during the procedure because I was going to be awake!

He wheeled me into the room which was so full of machines and equipment that there was barely enough room to maneuver the bed in to switch me over to the platform for the ablation. 

He was very chatty, really they all were, telling me about the equipment, what it did, what the doctor and assistants were going to do while they covered my entire torso with these huge 5" diameter ice cold sensors front and back, more oxygen in my nose. They had 12 monitors in here he said so that they could see every detail of my heart.

Then they tied my arms down.

I'm laying there breathing through my broken nose which constricts my nasal passages some thinking I forgot to clean my nose when I showered this morning and maybe I should have remembered to do that. They covered me up to my chin with a protective layer with a hole at my groin. When the doctor came in Terry started the sedative and said the doctor would stick me with an anesthetic, it would feel like a bee sting but would stop hurting immediately. In reality I barely felt the prick. And that was the last thing I remember until I rose to consciousness to complain that my shoulder was aching and again to say that the ache had spread to my collarbone. And again to tell him I felt nauseous so he had me turn my head to the side and held that dental spit sucking device to my mouth but the urge passed until it came again and again until I did throw up some gastric juice which he sucked away immediately. The nausea was an effect of the afib, he said. I had gone into afib during the procedure. Somewhere in there I remember hearing them talk about seeing the flutter circuit and again when they had established a nice sinus rhythm and that's it til I woke up back in the prep area, headache, nausea, and sore throat intact. Instead of the 4 hours I had read it would take it took less than two. Once I woke up they let Marc and my sister and my daughter Sarah who got there after they had wheeled me away for the procedure back into the prep/recovery room to wait with me until they were ready to take me upstairs to my room.

next: recovery and observation

one more and then on to other topics

I'm trying to keep up with everyone's blogs but I'm rather preoccupied as I'm sure everyone can imagine, still spending hours researching, sent off another barrage of questions via the patient portal. I've had a comment from one twin granddaughter on FB and a face time call from the other and been chastened by my daughter for not telling her/them about the results of my doctor's visit before I published it on my blog. That's not the way for her to find out, she tells me. Oops. My only excuse is that writing about it helps me assimilate what's going on. But, yes, I should have called her first.

Here's some other things I learned...atrial flutter is a right atrial disease, afib is a left atrial disease. In typical cases of flutter, the atrial (the upper chambers of the heart) are contracting at a rate of 150-300 bpm (beats per minute). The atrial rate of bpm is not the same as the pulse rate (ah, so this is why). The pulse rate originates in the ventricles (the lower chambers of the heart) which beat at some ratio of the atrial bpm.

So, the ablation is scheduled for the 25^th with a TEE scheduled on the 24^th. The TEE or Trans-Esophageal Echo is an echocardiogram from the inside where they can get pictures of my heart without having to look through the rib cage and lungs like a regular ultrasound echocardiogram from the outside, which is what I thought I was going to have after I told him btw, the cardiologist 2 years ago told me I had a leaky valve. I'll have an IV and they will sedate me but not put me under then numb my throat and ask me to swallow a tube with a camera on the end! Not sure I can do that especially with my throat issues. And how do you swallow a tube!? 

This whole thing just gets better and better and by that I mean worse and worse.

I had resigned myself to the outpatient ablation which turned into an inpatient procedure and drug administration and now this! This is way more than I'm prepared for. One of the questions I previously asked through the patient portal was if the sotalol manages flutter as well as afib why not just try the sotalol first to which they replied that it doesn't manage the flutter as effectively as it does the afib and flutter can induce afib so eliminating the flutter first makes it easier to control the afib. Basically. That and that as I age the condition will worsen and possibly become constant. Treating it now is more desirable than treating it once it becomes worse. Well, I have a whole week to decide whether or not I'm going to go through with it or get a second opinion (or rather third if you count the RNP as the first) or decide on trying just the medication first.

I'm in total overload. No more thinking about it til Monday. I have a mold to finish filling, I have a dog to walk, and a yard to water. Eleven inches of rain week before last and the ground is already so dry it's cracking.